Tag Archives: GPS Trackers

GPS Trackers for people with dementia

6 Apr

GPS Systems for people with Dementia: The Human Rights Issues

 

Background

There are a number of GPS systems available on the market.  Some are simple GPS trackers (which work with a SIM card, like a mobile phone), others have additionally functions, such as phone, panic/distress button or watch.  Some devices are similar to pagers and some are like watches that can be worn on the wrist, amongst the designs available.   Some devices have a location service associated with them, which has a pre-set protocol that will be agreed upon when the device is set up with the company, others may just work from an App and the individual can be located whenever the carer (App user) wishes.

 

It has been agreed by search and rescue organisations that this would be helpful in the scenario that a person with dementia (or possibly a learning disability or other cognitive impairment) gets lost and needs to be found by the emergency services, thereby protecting their Article 2 – Right to Life.  The issue relates to the process of tracking an individual and their legal rights to wear it or have it put on them, their Article 3 right – Freedom from degrading treatment, their Article 5 – Right to Liberty and their Article 8 – Right to Private and Family Life.

 

Mental Capacity

The Mental Capacity Act 2005 indicates that an individual is assumed to have capacity to make a decision unless it is proven that they do not.  The capacity to make any decision is specific to the complexities of that decision and the time at which the decision needs to be taken.  The Mental Capacity Act 2005 indicates that if an individual lacks capacity to make a decision, but will regain the capacity, as capacity can fluctuate, and the decision can be postponed, then it should be.

 

Scotland

Within Scotland, the legislative framework is the Adults With Incapacity (Scotland) Act 2000, a different legislative framework than England & Wales with the Mental Capacity Act 2005.   Within the Scottish legal framework, the principles discussed in this paper are consistent to the Adults With Incapacity (Scotland) Act 2000.

 

Consent to wearing a GPS Tracker

In the situation where the individual has capacity to consent, in accordance with the test of capacity of the Mental Capacity Act 2005, then they can consent to wearing it themselves (or not if they so choose).  In the scenario where the individual has a Health and Welfare Attorney or a Health and Welfare Deputy, then the Attorney or Deputy can consent to them wearing it.

 

Refusal to wear a GPS Tracker

If someone has indicated that they do not wish to wear one, then if they have capacity then it should not be placed on them.  If they lack capacity, but have expressed the wish not to wear a tracker, then their previously expressed wish should be taken into account in making any best interests decision.  It is therefore unlikely that it would be in the best interests of someone who has expressed the wish not to wear a GPS tracker for one to be placed on them, after the lost of capacity.

 

The Issue

The remaining issue then relates to someone who lacks capacity, and is without an Attorney or Deputy for Health and Welfare.  What is in a person’s best interest will always turn on its own set of fact and will be an individual decision in every case.  However some general guidance can be considered.

 

Firstly there should be a protocol, which reflects the Principles of the Mental Capacity Act, that anything done should be the least restrictive of their rights and freedoms.  Clearly the least restrictive is to do nothing, but this could cause serious harm to an individual at risk of wandering, which may be a risk to their Article 2 – Right to Life.  Therefore any protocol for wearing one of these devices should be on the basis that it is worn and used the least restrictive manner (in accordance with Principles of the MCA), which would therefore indicate that it should only be used when the individual is at real risk of being lost and in danger and not simply to check up on them.  Therefore once they are located and it is considered that the location is safe, then no further enquiries should be made and the individual should not be necessarily removed from their location. The individual is entitled to have their Article 11 – Rights of Assembly and Association respected.  If the individual is in a place that the carer does not consider safe, then they can be located and their safety established and if necessary returned home or to hospital or to wherever is appropriate in the circumstances.

 

There is a risk that this could be used for an oppressive level of either monitoring and/or control over the life of an individual.  A person with dementia is still entitled to live as well as they can and to make unwise decisions, if they have sufficient capacity to make such decisions, even if the carer does not agree with their decision/s.

 

The individual with dementia should therefore be entitled to live their life freely, go where they choose, associate with whomsoever they choose and should only have their location told to their carer, when the balance between the risk to their life is so great that it take paramount precedence over their right to their many freedoms.

 

The issue still remains, is it acceptable that a carer makes the decision that a person with dementia should wear a GPS tracker?  MCA s.5 indicates that any act done in the care of an individual for their care is lawful if it is considered to be in their best interests.  MCA s.5 is primarily aimed concerned at medical decisions, however does include the wording “care or treatment” [emphasis added], which could extend to the wearing of a GPS tracker for safety reasons, in the same way that “piper alarms” can be used in the home and considered part of their care.

 

Alternatively, it could be considered under the Research sections of the MCA (s30-34).  These sections relate to “intrusive research”, as part of a “research project”, which would need “approval” by the “appropriate body”.  These Research sections are primarily aimed at clinical trials, however on the basis that the research is the individual’s location, then these may be the applicable sections.  In which case, in order for the research (into the individuals location) to be lawful, it would have to have approval by the Secretary of State in the case of England and the National Assembly in the case of Wales.  If therefore opinion is such that these GPS trackers are considered Research rather than Care, then approval for them to be worn should be sought, on the basis of a defined protocol, that they would only be used to the extent that the risks to life outweigh the risks to rights and freedoms.  The remaining issue is that of a “research project”, however if a protocol can be agreed, then the body making the application for approval can do so on behalf of individuals and companies for this research project.

 

The potential problems

The 2 main issues are firstly that someone with dementia will wander and have a serious accident or will be killed.  Just because someone has dementia, they should still be allowed to take a certain amount of risk.  It is about balancing the risk, but to be too risk averse just because someone has dementia would be to interfere too much with their privacy and freedom.  If it is important to the person with dementia that they can have freedom to roam, then there must be an acceptance that is the price they pay to retain that freedom is a certain amount of risk.

 

The second issue is that the carer will use the tracker too oppressively.  A good example of this is a husband and wife, if one of them were to roam and have an affair, then s/he should have freedom to do so, even if their spouse and carer, doesn’t want them to. Having an affair isn’t illegal and the spouse should not use the GPS tracker to interfere with their freedom of association, to do so, would be a breach of their human rights.  But it’s very hard for the spouse / carer not to interfere, as there is a conflict in their role of carer and the role of spouse.  The issue may not be an affair, but the person with dementia has freedom of association, so should be allowed to go where they want and meet with whomsoever they want, as long as it isn’t illegal.

 

Summary

It is likely to be lawful for a person with dementia, who lacks capacity to consent to wearing a GPS tracker, to have one placed on them by their carer if the protocol for locating them is followed and it is considered to be in their best interests to wear it.  Approval by the Secretary of State or Welsh National Assembly may be required.  In every case, it still has to be considered in the best interests of that particular individual with dementia to wear it, by their carer.

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The Prime Ministers Rural Dementia Awareness Team

7 Jan

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The Prime Ministers Rural Dementia Awareness Team

 

On Monday 14 December 2015, the team met in the House of Commons with the sponsorship of Oliver Colville and his office.

 

The group has been going for over 2 years now and the work that they have done has advanced over that time.  The 2 key things that were discussed, along with the general progress of the group, was a framework and the GPS trackers.

 

The GPS trackers is the work that I have been most closely involved.  Colin Sturmer from Dartmoor Search and Rescue talked about the trial that was undertaken in November, when Ian Sherriff & I got “lost” and role played someone with a dementia.  The feedback was that even if someone takes a device off, it shows where they have been.  Without a GPS tracker, Dartmoor Search and Rescue (and no doubt other Rescue teams) can be given a 10 mile square area to search, with them, they have around a few hundred yards to search.  When teams of rescuers go out, depending on the weather conditions, they can search for 6-8 hours and then another team has to come and take over.  Their search is methodical and planned.  Colin explained that it is not at all uncommon for someone to be found during the time of the relief team and not during that first 6-8 hours.  With a GPS tracker, that time is reduced down to about 20-30 minutes.  That time difference means a lot to someone out in poor weather conditions.  A huge number of their searches are for people with a cognitive impairment, who can be difficult to find, as they often don’t know that they are lost!  Colin’s overall respond to the experiment with GPS trackers “there is no down side” (other than of course the cost).

 

So now the work can begin to raise awareness of the use of GPS trackers in the hope that people with a dementia will choose to use them.  We can also look to see if this should be included as a form of social care or social prescribing, but in order for that to happen, there will have to be some cost analysis and research done into this subject.

 

The other part of the meeting was taken up discussing a framework/protocol/covenant/best practise.  There was quite a bit of discussion about what it should be called, as the words have implications and the group will have to consider the implications of the word that they finally choose.  However it should be a summary of the work done to date by the group, which should form a document of best practise, which communities can adopt.  Different communities will need different regimes and it should not put off hard to reach groups.  So anything standardised, monitored and governed is likely to reach groups that are already engaged.  There will be a simple set of “wishes” of things to be achieved, which is expanded upon in more detail and the final level of this will be the research that has been done.  It will take careful thought to make this happen and bring it to a meaningful reality that will make a real different to those living with dementia and there are very passionate people involved in this group that will work hard to make this happen.

 

The future is very exciting and it is getting better for people living with dementia and their carers.  I’m proud to be part of this team.

GPS Trackers & Dementia

19 Nov

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GPS Trackers & Dementia

 

 

On Tuesday 10 November 2015 I went out with Ian Sherriff from Plymouth University, Ann Pascoe from Dementia Friendly Communities in Scotland (@a_carers_voice) and Rachel Silcock from Plymouth City Council.  We were all supporting the amazing volunteers from Dartmoor Search and Rescue (DS&R) in a training exercise.

 

We met on Roborough Down at about 7pm, the evening started off halteringly, as there was someone lost in the Tavistock area and the Plymouth team did not know whether they would have to go out on a real search to assist the Tavistock Team.  Anyway the person in Tavistock was found and we were able to continue with our exercise.

 

It was dark and there was intermittent drizzle, but not too cold or too wet.  We gathered around the Search and Rescue van for the briefing.  Standing around in the car park made me glad I was wearing something windproof & warm.

 

Then Ian went off with Ann, supervised by someone from DS&R, to make sure that at all times they were both safe.  I was allowed to join in with one of the search teams as we went to look for them using the GPS tracker Ian was wearing.  The co-ordinates were given in longitude and latitude and DS&R use OS coordinates, so they had to convert it.

 

After about 20 minutes of walking over rough ground on Dartmoor Ian was found & briefed to behave like someone with a dementia.  He was dazed & confused, we as the observing teams watched from a distance and the team dealt with him and tried to get him to come back to the van.  He became nervous and made a dash in the other direction and the rescue team followed and brought him safely back to the van.  Then we de-briefed.  There was a discussion that the observers were too close, but had been asked to step forward in order to effectively observe.  In a real life situation it would have been done differently, but we all knew it was a training exercise.

 

Then I was asked to be “found” and briefed to be a tearful and then aggressive woman.  So off I went, accompanied by Ian and a very lovely man from DS&R, who made sure that I was safe.  We found a spot to wait & he radioed back to get the team to find me.  It took about 30 minutes from the time we left the base for them to find me.

 

I was approached by a very warm and kind man who asked what I was doing and I said that I was looking for my cat.  He asked what my cat looked like & told me they had a cat that looked just like mine back at the van, so it might be tiddles!!  When he came near me, I then became very agitated and shouted at him not to touch me and moved away, pretending to be both scared and aggressive.  The response was fantastic, he asked the whole team to move right back, even though they had never been that close.  In moving away from my rescuer, I got within about 2m of a leat and they were immediately worried for my safety and moved me to a safer spot.

 

I was then slowly walked back to base and a very warm and friendly lady walked slightly closer to me and chatted to me about her cat and my cat.  The team were warm and friendly and when I told them my name was Dorothy (even though they had been looking for Hilary), they just went along with my fiction.  We chatted about all my 9 cats and the dogs I had whose names I couldn’t remember, I told them I was 27 (I wish) and about the farm I lived on.  And even though I shouted at them, they stayed calm and kept me safe.

 

The debrief was again interesting and they felt that finding someone with a GPS tracker would make life much easier, as it was accurate to around 0.25km, which gives a pretty small space for them to look in.  My feedback was about the care that the group had taken and their kindly approach, which de-escalated this situation very effectively.

 

I was told that they go out on exercise every week, come rain or shine.  They do about 30 searches a year, looking for approx 30-40% suicides or despondents and sometimes they get there too late.  Another 30-40% of people have a dementia or some other form of confusion, very few of their searches are for lost hill walkers.  They are all volunteers, who give up their time for the safety of us all.

 

I want to express my thanks and profound admiration for the work that they do.  Thank you for a great fun and interesting evening.

 

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